APMPPE
The other day I started seeing something weird in my right eye - a little wavy shimmery spot every now and then. I thought I was staring at the computer screen too much, but having just had my annual eye exam the week before, I decided to call and ask about it when I followed up on if my new glasses came in.
It's not a good sign when every person you speak with says "oh no" after you describe your symptoms.
The concern was that I might have a detached retina, which apparently has to be surgically reattached in a day or two or else you could go blind. Nice. This was day three. So, off to the eye doctor I go.
The eye doctor dialates my eye and spends forever shining a bright light into it to the point where I can't see anymore and when he instructs me to look up and to the right, I just hope my muscles are responding correctly because I can't see to tell.
The good news is that I don't have a detached retina. However, my body, which can never decide to be normal (low temp, low BP, low iron - I swear I have the metabolism of a lizard) has decided to once again do something unusual: the doctor tells me he believes I have AMPPE (pron. "amp-y") otherwise known as Acute Posterior Multifocal Placoid Pigment Epitheliopathy. Basically, this means I have lesions on my retina. It's a very rare disorder (Mass Eye and Ear saw 5 cases in 10 years). It fucks up your vision, then goes away - most of the time. It's a vascular inflammation, cause unknown, though sometimes it's preceeded by the flu (not in my case).
The internet is evil as all the message boards related to this (like two) are all full of people (like two) where it hasn't gone away and they have, like, actual holes in their vision. Fabulous.
So I'm seeing a retinal specialist tomorrow to verify that this is actually AMPPE. The flashes I'm seeing now don't bother me, really, but from what I read it typically gets worse before it gets better (weeks/months) and usually hops to the other eye too.
Even as bad as my vision is without glasses or contacts, I've taken for granted that it wouldn't get any worse until I was in my old age. If anyone has heard of this condition or knows of someone that has had it, I'd love to hear more about it. Wish me luck.
It's not a good sign when every person you speak with says "oh no" after you describe your symptoms.
The concern was that I might have a detached retina, which apparently has to be surgically reattached in a day or two or else you could go blind. Nice. This was day three. So, off to the eye doctor I go.
The eye doctor dialates my eye and spends forever shining a bright light into it to the point where I can't see anymore and when he instructs me to look up and to the right, I just hope my muscles are responding correctly because I can't see to tell.
The good news is that I don't have a detached retina. However, my body, which can never decide to be normal (low temp, low BP, low iron - I swear I have the metabolism of a lizard) has decided to once again do something unusual: the doctor tells me he believes I have AMPPE (pron. "amp-y") otherwise known as Acute Posterior Multifocal Placoid Pigment Epitheliopathy. Basically, this means I have lesions on my retina. It's a very rare disorder (Mass Eye and Ear saw 5 cases in 10 years). It fucks up your vision, then goes away - most of the time. It's a vascular inflammation, cause unknown, though sometimes it's preceeded by the flu (not in my case).
The internet is evil as all the message boards related to this (like two) are all full of people (like two) where it hasn't gone away and they have, like, actual holes in their vision. Fabulous.
So I'm seeing a retinal specialist tomorrow to verify that this is actually AMPPE. The flashes I'm seeing now don't bother me, really, but from what I read it typically gets worse before it gets better (weeks/months) and usually hops to the other eye too.
Even as bad as my vision is without glasses or contacts, I've taken for granted that it wouldn't get any worse until I was in my old age. If anyone has heard of this condition or knows of someone that has had it, I'd love to hear more about it. Wish me luck.
posted by Rebecca at 10:21 AM
6 Comments:
Update: my condition was diagnosed as MEWDS, which is also rare and related to AMPPE but maybe less severe. It went away in about a month. I had to have a retinal angiogram and had a reaction to the dye or something and just about passed out - my BP got frighteningly low. Also the dye they give you turns your skin bright yellow for a short period of time. Needless to say, I was not at my most glamorous that day. I'm glad it is over and my sight has returned to normal.
The day you posted your update was the day I got diagnosed with APMPPE. I had the same experience as you - I just assumed I had looked at a light too long but after a few days, I googled blind spots and learned it's not normal to get them and it's kind of a big deal :( The dye is not fun. It's makes me have to pee like every 20 min for days after. How long did it take your site to get back to normal? I don't have blog but here's my facebook. I might replace my pic with a pic of my eye: http://www.facebook.com/profile.php?id=504195314&ref=profile. My email is elijo98@yahoo.com. If you still have links to those message boards, I'd love to have them. I've been looking but it's hard to read what with the blind spots (!) Hope your eyes are well. Liz.
I was diagnosed with AMPPE about a year ago at the age of 21. I was playing softball and all of the sudden I could not see out of my right eye and very blurry in my left eye. I had been slightly sick that week, but just thought that my contacts were acting up. The next day my eyes were super sensitive to light and i was seeing large spots in my vision ( I compare it to when you look into the sun and then close your eyes) but that is what I was seeing at all times. At this point, I knew that something was wrong.
Went into an eye doctor's office where they looked at my eye's under a microscope for about 15 hours and decided they had no idea what it was. I then had to get tested for all sorts of auto-immune diseases and STD's to see if it was that. All the tests came back negative thank God but still left me with a lot more questions than answers. I was finally referred to a retinal specialist to determine what the heck was going on. He ran a bunch of tests to figure out what it was (i had to get my eyes photographed extensively by 3 different high powered machines and had an MRI on my head). Finally, over 3 days and 40 hours of examinations and tests, the retinal specialist determined that I had AMPPE. I got prescribed prednosone drops and drops to dilate my pupils but all those really did was reduce minimal swelling in my eyes.
I have had this for a year now, with appointments every month or so since. My vision has improved somewhat, but is still very blurry when I have to read text and focus in on specific items. Thankfully, my left eye is somewhat normal with a few spots and 20/25 vision with prescription. My right eye, however, has not been so quick to recover as I am still currently 20/100 with prescription and cannot focus or read anything as there is scarring in the center of my retina. I was thankful to finally have an answer to what was causing me to lose vision, but rather disappointed with the lack of quality information on the internet and also that there is no cure for it. I was also literally the first case this retinal specialist had seen, which is weird because he has been practicing for over 20 years and sees a lot of patients here in Minneapolis. He also told me that after nine months, it is extremely unlikely that i will regain any of my vision. Something this life changing really made me reevaluate priorities in my life knowing that they could be taken away at any moment in your life, so getting AMPPE made me appreciate a lot more things in life. Hope you all regain your vision and appreciate the little things in life.
My husband got handed the news he had AMPPE almost a year ago. I have read and read just about all I can fin out there on the internet. Very misleading as most of the info says sight will be regained, but then reading messages from people with it say they have not gotten full vision back. My husband is 20/30 in one eye and 20/60 in the other but both center vision is blocked from scaring. He is in glasses which help some. He has to have everything in large pring to see it. He has not driven since this has happened. We are looking at him getting medically discharged from the military as he is not deployable. He goes back in Dec. hoping there will be good news, b ut have a feeling it will be the same. they had him on steriods for a week, I do not beleive that was long enough at all.
I was diagnosed with APMPPE in March of this year. 6 months later and I believe some of my symptoms are returning, I have light sensitivity, floaters, spotty vision and see flashes of light. At my last check up about a month ago doctor said that my eyes were as healed as they ever would be, but now they are saying these symptoms are due to my eyes still healing..? Anyone experience anything like that? How long did it take you for everything to become "normal"again?
you should see your ophthalmologist right away. I think APMPPE is one time occurrence but depends on what caused it. For me, it was an overreaction to a sinus infection - inflammation blocked the blood vessels to the eyes. For inflammation, the ophthalmologist can give you a steroid shot. The other main cause seems to be mini stroke which I don't know if there is anything for that. BUT you also be having an ocular migraine -A migraine that involves visual disturbance is called an ocular migraine. ... During an ocular migraine, or migraine with aura, you may see flashing or shimmering lights, zigzagging lines, or stars. Some people describe psychedelic images. It may also cause blind spots in your field of vision.
THis happened to me, I got blind spots and total freaked out it was apmppe again.
also there is an APMPPE facebook group if you want to connect with others. I think that is the best - https://www.facebook.com/profile.php?id=2364003405&ref=br_rs
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